When: Wednesday thru Friday, December 4, 5, 6, 2024

Where: Online

Cost: Free, registration required

Target Audience: People living with or interested in learning about Young Onset Parkinson’s Disease.

Goal: To understand and explore topics that are directed towards living with YOPD, recognizing that the concerns and disease experience is different for those diagnosed early in life whether looking at the individual’s role in managing their PD, their relationships with others, and their medical care. 

Three themes to choose from:

 
Made possible with support from Mitsubishi Tanabe Pharma America

Wednesday, December 4, 2024 

IN RELATION

INDIVIDUAL

MEDICAL 

12-1PM ET/ 5-6PM GMT
 
Parenting with Parkinson’s

Moderator: Rebecca Gifford (Canada)  
Speaker: Soania Mathur (Canada)

We will discuss the challenges and opportunities that parents with YOPD, their co-parents and children of people living with Parkinson’s face.

3-4PM ET / 8-9PM GMT
 

Cognition & Mental Health  

Moderator: Rune Vethe (Norway) 
Speaker : Greg Pontone (USA)

This presentation will help you to identify and cope with mental health and cognitive changes while living with Parkinson’s.

Thursday, December 5, 2024

INDIVIDUAL

MEDICAL

IN RELATION

1:30-2:30PM ET/ 6:30-7:30PM GMT  
 
Psychiatric and cognitive medication side effects in Parkinson’s disease  

Moderator: Rebecca Miller (USA)  
Speaker : Dan Weintraub (USA) 

Parkinson's treatments not only have an effect on motor symptoms, but can also have an impact on one's mental state, both in positive and negative ways, which will be reviewed in this presentation.

3-4PM ET/ 8-9PM GMT
 
Maintaining Personal Relationships: Partner & Social Circle

Moderator: Alison Anderson (UK)
Speaker: Bjørn Tore Bergem (Norway) 

Parkinson's comes as an uninvited guest into life. Uninvited guests have a tendency to create some commotion. Partners, children, siblings, parents will all be affected by this guest. This guest is just not uninvited but insists on staying. Relations need to be renegotiated.
How couple- and family relations may be affected by Parkinson’s, and ways of handling it, will be the focus of this presentation.

Friday, December 6, 2024

MEDICAL

IN RELATION

INDIVIDUAL

3-4PM ET/ 8-9PM GMT
 
Coping with PD: Two perspectives 

Moderator: Geoff Constable (Australia)  
Speakers: Matt Eagles (UK) and Sree Sripathy (USA) 

The art of living positively with YOPD with recognition of gender differences and implications on wellness.

Faculty

Alison Anderson (UK): After a 30 year career in the National Health Service, as a nurse and hospital manager, Alison is now enjoying a very energetic 'retirement'. Diagnosed with Parkinson's at the age of 46, she has since become an active member of the Parkinson's community, setting up a young onset support group and working with healthcare professionals to drive neurology service improvements in her locality. Alison is a passionate advocate for exercise and has a love of cycling. She has undertaken a number of cycle challenges since diagnosis, raising funds for research into Parkinson's. In 2023, Alison led a team of 20 people who cycled 1,600km from the UK to Barcelona to attend the WPC for which she was an ambassador. Alison now sits on the planning committee of the Pedal to Phoenix cycling initiative being planned for the WPC in Phoenix, Arizona in 2026.

Bjørn Tore Bergem (Norway) is clinical social worker and family therapist in Oslo, Norway. After about 30 years in the field of child and adolescent psychiatry, he has for the past eight years practiced as a couple- and family therapist in a public family counseling office where he has worked with many couples and families living with a wide range of chronic disorders.
He has for about a decade been affiliated with the Norwegian Parkinson's community as a counselor for the The Norwegian Parkinson's disease organization. He has given speeches on relationship issues at both local and nationwide event as well as at family camps. His focus is to support the children, partners, extended family, friends and colleagues, as well as the one living with Parkinson's to understand and navigate how they are affected by the diagnosis.

Matt Eagles (UK) is a positivity activist and have lived with Parkinson's for nearly 50 years. He had DBS in Sept 2006 and work as Head of Patient Voice for the Havas Lynx Group . In 2017 he founded Parkylife - the brighter side of Parkinson's, a not for profit  project which offers little nuggets of positivity to the Parky verse. In 2020 he was awarded  the Public Engagement of Neuroscience Award by the British Neuroscience Association . Also in 2020 he was a finalist at the National Diversity Awards  in the Positive Role Model Category for Disability. He loves to challenge himself and over the years he has skydived, wing-walked, ziplined and  ab-sailed.  He has spoken all over the world at Congress's including Wired Health and he is the first patient  to chair a track at a commercial pharma conference ironically at the exact same venue in Barcelona.

Naomi Estolas (USA) is a Parkinson's advocate who lives life to the fullest to the best of her abilities.   She was diagnosed in April 2015 and continues to maintain a positive attitude despite the degenerative challenges of the disease. Naomi was the lead co-founder of the ‘Soaring with Hope for PD’ (SWH) art installation showcased at the 2019 Kyoto Japan WPC. Naomi’s goals include raising awareness, helping find a cure to end Parkinson’s, and assisting others with PD. Her positive attitude, encouragement, and support help inspire and motivate those with or impacted by Parkinson’s to live well and to always do the best they can.

Richelle Flanagan (Ireland) is a CORU state registered dietitian who has been practicing Dietitian for 19 years. She was president and CEO of the of the Irish Nutrition and Dietetic Institute (INDI), the professional body for Dietitians in Ireland. She noticed her own Parkinson’s Disease (PD) symptoms when she was 3 months pregnant with the daughter. She hid her diagnosis for 2 years for fear of the stigma both socially and career wise. After attending the World Parkinson Congress in 2019 she was inspired by other people with Young Onset PD to speak out to drive change in treatment, care, and research for people with PD. She has since become an ambassador for the World Parkinson Congress in Barcelona, 2023 and a committee member of the Dublin branch of the Parkinson’s Association of Ireland. She is particularly passionate about  two areas (1) the importance of diet for PD and (2) the unmet needs of women with PD. She recently co -authored a paper on the unmet needs of women with PD https://movementdisorders.onlinelibrary.wiley.com/doi/10.1002/mds.28921. he is a co-founder of the Women’s Parkinson’s Project www.womensparkinsonsproject.com and co-founder of a start-up, My Moves Matter  www.mymovesmatter.com, a digital self care companion to the meet the specific needs of women living with PD and empower women to live their best lives.

Rebecca Gifford (Canada) is a writer, communications executive and former host of When Life Gives You Parkinson’s, a podcast she hosted with her husband and PwP Larry Gifford. She is a Parkinson’s and care partner advocate, and a proud PD Avenger. She facilitates creative writing and other workshops and webinars for multiple organizations within the global Parkinson’s community and beyond. She contributed to the Care Partner Virtual Talk Series as a speaker and planning committee member, and as a facilitator in the Care Partner Lounge in Barcelona. She lives in Vancouver, British Columbia, with her husband and 14-year-old son. You can find her at www.rebeccagifford.com.

Tim Hague (Canada) is a retired nurse of 20+ years who devotes his time to professional speaking, writing and as founder of the Parkinson’s Wellness Centre, U-Turn Parkinson’s. He is a cofounder of the Global Alliance to End Parkinson’s; The PD Avengers. He is a published author (Penguin Random House Canada) of the bestselling book Perseverance: The Seven Skills You Need to Survive, Thrive and Accomplish More Than You Ever Imagined. He has spoken for Tedx and is sought after across North America for his motivational and inspiring presentations. After having been diagnosed with Young Onset Parkinson’s Disease at the age of 46 Tim and his son went on to win the first season of the reality television series The Amazing Race Canada. He is an outspoken and effective advocate on behalf of people living with Parkinson’s around the world. To learn more about Tim’s work visit: www.TimSr.ca, www.UTurnParkinsons.org and www.pdavengers.com.

Dr. Soania Mathur (Canada) is a family physician living outside of Toronto, Ontario, Canada who resigned her clinical practice twelve years following her diagnosis of Young Onset Parkinson's Disease at age 28. Now she is a dedicated speaker, writer, educator, and Parkinson's advocate. Her platform, UnshakeableMD  serves as a resource for patient education as well as an outlet for her personal experiences with this disease.
Dr. Mathur is an active speaker in Canada and internationally, serves on committees and boards for several organizations and has authored several published papers and online pieces that focus on patient education, empowerment, and involving patients in all areas of clinical research.
She served as Co-Chair for the Patient Council of The Michael J. Fox foundation for Parkinson’s Research and is also a member of the Executive Science Advisory Board at MJFF. She also devotes time as a member of Board of Directors at The Davis Phinney Foundation, is part of the Editorial Board for the Journal of Parkinson’s Disease and serves on The Brian Grant Foundation Advisory Board. Dr. Mathur has valued her involvement with WPC as both a speaker and committee member and was awarded the World Parkinson Coalition Award for Distinguished Contribution to the Parkinson’s Community at the WPC in 2019. She was also privileged to be recognized in 2020 by receiving the Alan Bonander Humanitarian Award for her work in the PD community. Locally she is a member of the Board of Directors for the Lakeridge Health Foundation and also sits on the Patient Advisory Board for the Toronto Western Hospital Movement Disorder Clinic where she chairs the research committee.
Recently she co-founded PD Avengers, a self-funded, global alliance of Parkinson’s advocates dedicated to unifying the global PD community to add urgency to the areas of wellness, research, and advocacy, to end Parkinson’s (www.pdavengers.com).

Dr. Becca Miller (USA) is a licensed clinical psychologist and Associate Professor at the Yale School of Medicine, Department of Psychiatry. She received her masters and doctorate from Long Island University, Brooklyn, and currently works as Director of Peer Support at the Connecticut Mental Health Center in New Haven, CT. Becca was diagnosed with Young Onset Parkinson’s Disease at age 39 after living with undiagnosed symptoms for 10 years prior. She has served as a delegate and spoken on YOPD and parenting at the World Parkinson Congress in Portland, OR and Kyoto, Japan. She lives in New Haven, CT, with her 10 year-old daughter.

Dr. Greg Pontone (USA) is the director of the Parkinson’s disease Neuropsychiatry Clinic and an Associate Professor in the Departments of Psychiatry and Neurology at Johns Hopkins University School of Medicine in Baltimore, Maryland. After completing a medicine internship and residency training in psychiatry at Johns Hopkins, Dr. Pontone completed a two-year fellowship in geriatric psychiatry and movement disorders focusing on Parkinson’s disease through the Clinical Research Program of the Morris K. Udall Parkinson’s Disease Research Center. He also completed a fellowship in Clinical Trial Methods in Neurology sponsored by the National Institute of Neurological Disorders and Stroke. He is board certified by the American Board of Psychiatry and Neurology and has an added certification in the specialty of geriatric psychiatry. He serves on the Scientific Review Committee and as the chair of the Cognitive/Psychiatric Working Group for an international consortium of Parkinson's disease researchers, the Parkinson Study Group. He is an editorial board member for the American Journal of Geriatric Psychiatry and Parkinsonism & Related Disorders.

Dr. Bart Post (Netherlands) obtained his medical degree in 1999 at the University of Maastricht. In 2000 he started his training as a resident in Neurology at the Academic Medical Centre in Amsterdam which he completed in December 2008. In 2002 he started a research project on ‘Prognosis in Parkinson’s disease’ that resulted in a PhD thesis in 2009. In 2006 he started a master of Sciences (MSc) education in clinical epidemiology at the EMGO institute in Amsterdam. In 2009 he was certified as a clinical epidemiologist. Since 2010, he has been working as a movement disorder neurologist in the Parkinson Centre in the Radboudumc in Nijmegen. He has founded and organized several masterclasses on parkinsonism and movement disorders in the Netherlands.. In 2018 he was a visiting member of the movement disorders group of Victor Fung in Sydney, Australia. At the department of neurology of the Radboudumc he is chair of the residency program for neurologists and co-director of the Parkinson Foundation center of excellence Radboudumc, Nijmegen, the Netherlands. In the Radboudumc he is director of all the residency programs and is the founder of the clinical and research group for those with Young Onset Parkinson’s at his center.

Dr. Miriam Rafferty (USA) is a Research Scientist, the Director of Implementation Science, and a Physical Therapist at the Shirley Ryan AbilityLab, as well as an Assistant Professor at Northwestern University’s Feinberg School of Medicine in the Departments of Physical Medicine & Rehabilitation and Psychiatry & Behavioral Science. She is a Board Certified Neurologic Physical Therapist who works with people with Parkinson’s disease. Dr. Rafferty completed her clinical doctorate in physical therapy from Washington University in St. Louis and earned her PhD in Neuroscience from the University of Illinois at Chicago. Dr. Rafferty’s current research focuses on health services delivery models for people with Parkinson’s disease, particularly examining how proactive rehabilitation can facilitate long-term community exercise participation. She also uses implementation science methodology to improve adoption of evidence-based practices and conducts research to inform the implementation of novel technologies into real-world rehabilitation settings.

Sree Sripathy (USA) is a South Asian writer, photographer, artist and disability advocate based in the SF Bay Area.  She is a Co-Founder of the Women’s Parkinson’s Project and an Ambassador and PD Council Member for the Davis Phinney Foundation. Sree is currently a full-time staff photographer for a local media outlet. She was diagnosed in 2015 with Young Onset Parkinson's disease.

Omotola Thomas (UK) was diagnosed with young onset Parkinson’s disease at 35, is the founder of Parkinson’s Africa – the first, and only, PD charity established to support and empower the pan-African PD community. In addition to serving as the Trustee Chair of Parkinson’s Africa, Omotola actively volunteers her time to other PD charities and causes.
Currently, she is also serving as:
 - A board member for the World Parkinson’s Coalition.
 - An ambassador for the 6th World Parkinson Congress to be held in Barcelona, in 2023.
 - An advisor and patient advocate for the Adewunmi Desalu Parkinson’s Foundation.
 - A patient advocate for the International PD Genomics Consortium, Africa (IPDGC - Africa).
She obtained both her bachelor’s degree (in Systems Engineering) and her master’s degree (in Project Management) from the George Washington University; and currently works as a Project Manager for a renewable energy company.
Omotola is also a writer and speaker, and loves listening to music and singing.

Rune Vethe (Norway) served as an Ambassador for the 5th World Parkinson Congress. He was diagnosed with Young Onset Parkinson's Disease in 2009 at the age of 34. He has channeled his professional skills in educational therapy, family therapy and physical education into being a Parkinson's advocate in Norway. Rune is a cyclist and a Rock Steady Boxing coach and boxer. He focus on how exercise impacts the disease, how the disease impacts personal relations in life and how this can merge into long term coping strategies.

Dr. Daniel Weintraub (USA) is Professor of Psychiatry and Neurology at the University of Pennsylvania School of Medicine (Penn) and Psychiatrist at the Parkinson’s Disease Research, Education and Clinical Center (PADRECC) at the Philadelphia Veterans Affairs (VA) Medical Center.  A board-certified geriatric psychiatrist, he conducts clinical research in the psychiatric and cognitive complications of Parkinson’s disease (PD) and related disorders.  He completed a NIMH Career Development Award related to depression in PD, and has been PI or Core Lead on grants from NIH, Department of Veterans Affairs, University of Pennsylvania School of Medicine, the Fox Foundation, the International Parkinson Disease and Movement Disorder Society, and several industry-sponsored studies.  He currently is Lead of the Clinical Core of the Penn NIA U19 focused on cognitive impairment in PD, and co-PI of the VA Cooperative Studies Program (CSP) #215 clinical trial for treatment of psychosis in PD.  He is Chair of the Cognitive-Behavioral Workgroup and on the Executive Steering Committee for the Fox Foundation-funded Parkinson’s Progression Markers Initiative; serves on the International Parkinson and Movement Disorder Society (IPMDS) Rating Scales Review Committee, Steering Committee of the Non-Motor PD Study Group, Education Committee, and Task Force for Parkinson’s Disease Sub-types; and is co-Chair of the Cognitive Subgroup for the NINDS Common Data Elements.  He serves on the Scientific Advisory Council of the Lewy Body Dementia Association (LBDA) and is an Advisor to the Critical Path for Parkinson’s Consortium (CPP) of the Critical Path Institute.  He serves as a reviewer for the Department of Defense Congressionally Directed Medical Research Programs (CDMRP) Parkinson’s Research Program (PRP) and the American Parkinson Disease Association (APDA).  Dr. Weintraub also is a long-time Associate Editor of Movement Disorders Journal.

 
WPC thanks the lead sponsor for making this program possible